Dr. Anne Antrim (biography and disclosures)
What care gaps I noticed
I recently had to review the data on long term outcomes for survivors at extremely low birthwt (<800 g) or extreme prematurity (<26 wks). An article from our own institution and another showed me some gaps in care that I had not been addressing and that seemed to be missed in the community as well. Prior to my review, I was missing the subtleties of disability that the ex-premature child can have and how these differences can significantly impact schooling and daily living. I was so keen to applaud any survival that I was not recognizing (and thus not providing support for) the degree of ongoing difficulties these families were facing.
What changed my practice
In my review of the outcome data, and particularily looking at data from our own institution, I was reminded that infants born at the limits of viability (< 26 wks GA or <800 g) have a significant percentage of morbidity and mortality even though not born with a syndrome or particular anomalies. We are seeing a higher percentage of extreme prematurity associated with assisted reproductive technology as a function of multiple births and risk of premature delivery in itself.
|GA (wks)||All births||Liveborn||Delivery room deaths||NICU deaths||NICU survivors||Survival Rate (%)|
Taking from Dr. Synnes’ article, the results on morbitidity for survivors at 23-25 wks gestations are as follows:
Normal development 40% Mild impairment 30% Moderate impairment 20%
Severe impairment 10% More than 50% of children born extremely prem will have a learning disability
Negative predictive factors include: male gender, multiple births, choriamnionitis, prolonged rupture of membranes, intrauterine growth restriction and underlying genetic disorders. Even if the final outcome will be normal or mildly impaired development, these children follow their own developmental trajectory in childhood and their development may not look much like that read about in parenting advice books.
What I do now
1. Acknowledge and support the ‘survivor’ characteristic of patient and parent.
The data from these articles looks first at survival and then long term outcomes. These children are survivors as are their parents. It has amazed me how often asking about the parental experience in the
NICU can cause a parent to cry in memory even 4 years after discharge. The majority of parents have been through emotional trauma during their time in the NICU and we have 2 social workers dedicated to the NICU to help with acute stress. There is not a formal community support structure for parents of ex-prems but health caregivers can assist by recognizing the signs and symptoms of post-traumatic stress, acknowledging the stress and connecting these families with mental health supports in the community if it is needed.
2. I believe that putting the child in a survivor category creates perspective if the outcome is anything but clinically normal. As parents mourn the loss of a “normal pregnancy and birth experience”, they have a more than 50% chance of having ongoing issues dealing with an atypical childhood for their child. The word survivor helps allude to the spectrum of sensory issues these children are plagued with. Rather than being safely encased in their mother’s uterus, these children went through a number of noxious stimuli of no predictable pattern. They are often easily upset by new sensations and have a lower threshold for sensory overload. I now try and review this information with parents in the final weeks of preparing for discharge home. Our nursing staff in the NICU have been education the family from the first day about how to read an infant’s cues, judging when the child is over or understimulated, and teaching parents practical ways to help their children cope. This valuable education continues with our community Infant Development teams.
3. Provide anticipatory guidance regarding functional expectations based on evidence. From the outcome data from BCCH in the past, we know that some children with a moderate and most children with a severe disability will be unable to live completely independently as adults. Given that the final outcome may not be evident till ages 3-5, the discussion of future independence is often not addressed until later visits in the Followup Clinic. I am not adverse to the timing of this as I think that some families might be crushed by the burden of the future if they are struggling in the now. Our followup team attempts to harness as many community resources as are needed on an ongoing basis so that the family is supported in the present. Given that our followup visits end at age 4 ½, we try to make recommendations to community caregivers that will ensure continuity of support in areas such as schooling, speech and language therapy, occupational therapy and physiotherapy.
4. Address the multi-factorial nature of the potential learning disabilities. Some time after the initial crisis of the extremely premature birth is over, parents usually begin to ask questions about long term outcome. This discussion then leads to a review of outcomes, including learning disabilities, how these are defined, diagnosed and treated. We can often get an advance warning on learning disabilities in our followup clinic with our formal Psychologic assessments. We encourage parents to pay close attention to school progress and work in tandem with educators to ensure that a quiet or disruptive child is not labeled a behavioural issue when the risk of learning disabilities is so high. Another barrier to a successful educational experience is poor fine motor skills. These children print like doctors but without the speed of production! Poor fine motor skills also affect activities of daily living such as eating, tooth brushing and dressing. Parents of ex-prems are encouraged to find fun activities on a daily basis that help develope fine motor skills. The occupational therapists have a wealth of suggestions for this area.
5. Given that the NICU experience was “the most difficult struggle I have ever had in my life” (a father’s quote), we owe the family a full review of the cause of the premature birth. If the family is considering having more children, they want reassurance that we will do our best to try and prevent a premature birth in future pregnancies.
In summary, these children may “look” normal but their NICU experience has had a profound effect on them and their families. As caregivers, we want to specifically ask about potential issues and offer advocacy for these families in the community and in the schools.
References: (Note: Article requests might require a login ID with the BC College of Physicians website or UBC)